Investing in bereavement care as a public health priority

Abstract

Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient’s death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority.

Introduction

The public health toll of bereavement is well documented. Bereaved individuals are at increased risk for numerous adverse outcomes, including prolonged grief disorder,¹ mood and anxiety disorders,² existential distress,³ decreased work productivity,⁴ adverse health behaviours,¹ neglect of health care,⁵ cancer,⁶ heart disease, suicide, and death.⁷ Excess mortality rates over the past several years⁸ and humanitarian crises worldwide, including war and armed conflict, are increasing the urgency for national-level bereavement strategies and models to alleviate grief-related suffering through timely and strategic interventions.⁹ The need for coordinated public health efforts supported by multilevel resource investments to prevent the damaging effects of interpersonal losses is greater than ever.

One area in which these targeted public health improvements are crucially needed is in palliative care.¹⁰ Offering a holistic approach to alleviate suffering for individuals who are seriously ill and their families, palliative care culminates with bereavement care in both theory and practice guidelines.¹¹ Yet, despite it being an integral part of high-quality, family-centred health care, bereavement support is an often under-resourced aspect of palliative care provision.¹⁰ Bereavement care has been labelled as the poor cousin of palliative care¹² and is beset with access inequities.¹³ Ideally, bereavement care includes pre-death grief education and support, family-focused psychosocial and spiritual care during the dying process, bereavement services after the death to nurture and sustain surviving family and community members, and assistance with transitioning to community-based support and psychosocial services for those who need long-term professional care.¹⁴ It also includes support for the workforce, as professional caregivers are affected by repeated losses. To our knowledge, this comprehensive approach has yet to be routinely implemented by national or global health systems.

Groundbreaking reports of the Lancet Commissions on the value of death¹⁵ and global access to palliative care and pain relief¹⁰ highlighted the undeniable need for improved bereavement care delivery infrastructure. The Lancet Commission on the value of death boldly acknowledged that “bereavement has been overlooked”¹⁵ and called for recentring priorities to tackle the social determinants of death, dying, and grief. The Commission highlighted key health and social care imbalances whereby westernised health and death systems have medicalised death and dying processes.¹⁶ This has resulted in both the implicit and explicit disenfranchisement of family and community involvement throughout illness and the time surrounding end of life. Despite these powerful calls to action, guidance on how to enhance access to this basic human health and social care need has not been outlined. In line with this call, we recommend a transitional bereavement care model that can help guide the establishment of services within health-care systems tailored to grievers’ needs, as well as the development of needed community-based supports following the death of a person who is seriously ill.¹⁷

A transitional model of bereavement care

Socially responsible family-centred care requires health systems to accompany bereaved families as they transition from institutional to community settings and to strengthen the capacity of communities to sustainably support grievers. However, dedicated institutional resources to support grieving individuals are rare. Although, in theory, bereavement care falls under the auspices of palliative care clinicians, they often have little training in bereavement and inadequate time and resources to provide bereavement aftercare.^10,18,19 Both the medicalisation of palliative care and health-care systems’ promotion of family-centred care have inadvertently fostered both patients’ and their families’ sense of dependence on the system itself.¹⁵ After a patient’s death, bereaved individuals commonly confront the additional losses of the health-care team and institution, often resulting in a sense of abandonment and leaving them in a precarious emotional lurch. Given health-care institutions cultivate this dependency on their systems throughout the care trajectory, it should be incumbent on these very institutions to address grief needs before and after a patient’s death.²⁰

Continuity of care up to and including bereavement is rooted in an ethic of non-abandonment. However, finite resources are a stark reality of health-care systems. Moreover, outside of health-care settings, availability and access to professional bereavement supports are also scarce, even in geographical locations with accessible mental health services. Existing community bereavement supports are often inadequate because of deficits in resources and training in evidence-based grief assessments and interventions. The situation is even more dire in low-income and middle-income countries. As already-limited institution-based services wane, social support from the community (eg, family, friends, workplace, or religious institutions) frequently dissipates in parallel, precisely when it is needed most. Furthermore, support that is available might be problematic because of the pervasive lack of grief literacy in many communities.²¹ Thus, community-based supports in their present form are insufficient²² to effectively manage the sequelae of grief as institution-based services taper off. The Lancet Commission on the value of death advocated for the development of global compassionate communities to support bereaved individuals.¹⁵ This vision is essential to strive for, but it will require coordinated and evidence-based initiatives that promote grief literacy²¹ and optimise social support in the wake of loss.²³

We argue that transitional bereavement care is necessary to bridge the gap between health-care systems and the community-based bereavement supports. A transitional bereavement care approach would involve establishing institutional supports to prevent poor bereavement outcomes, with dedicated personnel applying evidence-based care tailored to the individual’s level of need. This approach requires clinicians to be bereavement conscious²⁴ in their practices (eg, facilitating discussions to prepare the family and supporting decision making to minimise regrets), adopting mindfulness about what the family might emotionally and practically contend with while the patient is still alive, and then continuing care beyond the death. In parallel, community support would be further developed so that grievers can effectively transition from institution-based resources to those available in their neighbourhoods, workplaces, schools, and places of worship (figure). Transitional bereavement care would also involve shoring up the quality and availability of institution-based offerings and triaging resources according to the bereaved family members’ needs, while gradually building sustainable professional and lay supports in the community (figure).

Figure: Conceptualising transitional bereavement care.

Although institution-based support is expected to decrease over time as community-based supports increase, this decrease is not expected to be linear, but rather be wave-like, as grievers might need to reconnect with the patient’s treating medical team or access broader institutional resources intermittently and unpredictably (eg, to answer questions about the cause of death, attend annual memorials, or participate in drop-in bereavement support groups).

Addressing how to establish supports on both health-care institution-based and community fronts, the transitional bereavement care model complements other recommended models of bereavement care, such as the three-tier public health models proposed by Aoun and colleagues^25,26 and Bereavement Network Europe,²⁷ and adapted into four tiers by the Irish Hospice Foundation.²⁸ These tiered public health models address the types of support that need to be implemented, highlighting how support should be tailored to the individual grievers’ needs and level of risk for poor bereavement outcomes. In the three-tier model, the bottom tier represents the largest subset of the population who are considered low risk for poor bereavement outcomes, the middle tier represents those at moderate risk, and the top tier represents those at highest risk. Bereavement support recommendations are stratified accordingly, with those at low risk potentially benefiting from universal approaches, such as support from family and friends (general), those at moderate risk potentially benefiting from individual or group peer support or counselling (selective), and those at high risk potentially benefiting from professional mental health care (indicated).^25–27 The four-tier model further breaks down those who might benefit from professional support, differentiating those at moderate risk who have more complex needs and would benefit from working with a professional with some advanced knowledge about bereavement from those at high risk who would benefit from work with a mental health professional with expertise in bereavement.²⁸ These innovative models are inherently cost-effective because they depend primarily on community, rather than institutional support, and given that the majority of bereaved individuals will adapt to their loss without formal or professional intervention. These tiered models cannot exist in a vacuum and must be contextualised by setting to promote culturally tailored grief literacy²¹ among both communities and health professionals so they can optimally support bereaved family members.

Implementation considerations

True family-centred care is taking full accountability for provision of high-quality care and seeing it through to the end; in other words, beyond the patient’s death and with continued attention to the experiences and health outcomes of grievers. The transitional bereavement care model ensures that institutions do not abandon families after a patient’s death while acknowledging the limits of their resources and scope of responsibility. Bereavement care needs to be the standard although not standardised; that is, offerings by both the institution and in the community should be personalised based on the individual griever’s level of need.

We propose that implementation of this transitional care model should be part of public health interventions and international grief support strategies called for by the Worldwide Hospice Palliative Care Alliance²⁹ and aligned with the seminal contributions of the Lancet Commissions on the value of death and global access to palliative care and pain relief.^10,15 For instance, the global access to palliative care and pain relief Commission introduced the concept of serious health-related suffering—suffering associated with illness or injury of any kind that is considered serious when unable to be relieved without medical intervention and when it compromises physical, social, spiritual, or emotional functioning, or both.¹⁰ The global access to palliative care and pain relief Commission acknowledged the suffering of bereaved family members as a frequently unmet need requiring ongoing support from palliative care clinicians and community health workers. Furthermore, the global access to palliative care and pain relief Commission called for ensuring social support for family caregivers as a complement to the other components in their essential package of palliative care health interventions (eg, symptom management medicines, medical equipment to ensure comfort and dignity, and human resources).¹⁰ As future endeavours are enacted to more accurately measure and relieve serious health-related suffering on a global scale, bereavement-specific serious health-related suffering should be explicitly defined and incorporated into research and policies that aim to alleviate the total burden of serious health-related suffering arising from the continuum of care related to life-limiting illness and injury. Bereavement-specific serious health-related suffering would provide an empirical rationale for policy makers and clinicians to centre the caregiver experience and bridge the gaps between available institutional and community-based resources. In addition, bereavement-specific serious health-related suffering would ideally go beyond considerations following the death of the patient, and account for causes of pre-death psychological, social, spiritual, and physical serious health-related suffering that caregivers commonly experience, such as self-management of their own serious illness or injury, social disconnection, or financial strain (especially when layered onto extreme poverty)—factors that are often associated with suffering in bereavement.

Institutions and health systems should lead efforts to educate, empower, and partner with communities. If compassionate communities are realised and sustainable, and there is cultural proliferation of grief literacy, the need for institutional involvement is likely to diminish over time. Achieving this goal will require sustained financial and resource investments as well as shifts in culture and mindset, both within health-care systems and communities. Civil society organisations, in partnership with institutional stakeholders and ministries of health, must implement research and advocacy processes that address barriers to transitional bereavement care access across bereavement contexts, community settings, and health systems.³⁰ For example, a diagonal approach that focuses on interventions to strengthen infrastructure might be used to holistically evaluate public health level implementation needs for transitional bereavement care models by assessing gaps in health system steward ship (ie, national bereavement plan or programme, monitoring, evaluation, and accountability), financing (ie, financial coverage for bereavement services), delivery (ie, grief centres or services, particularly in socially deprived settings), and resource generation (ie, availability of grief specialists, health professional curricular integration of bereavement, and bereavement research).³⁰

Moreover, it is important to acknowledge the substantial need for bereavement care for those grievers bereaved by losses beyond the context of serious illness and palliative care, including but not limited to deaths caused by life-limiting injuries and accidents, drug overdose, suicide, homicide, armed conflict, and terrorism. Health-care systems are in a unique position to serve all grievers because of their multiple potential touchpoints with bereaved individuals, be it through primary, emergency, long-term, or other health-care settings. Although our proposed model does not specifically address all the potential circumstances of bereavement, the need for family-centred care and compassionate communities remains crucial to ensuring public health regardless of the cause of death.

Conclusion

Our recommendations are intended to cultivate a bereavement-conscious workforce;²⁴ grief-literate, compassionate communities;²¹ and health and social care systems that centre bereavement as an inherent element of the duty to care. We must bring bereavement care to the forefront in the health and social care discourse and transform the urgent needs surrounding grief and grieving from an afterthought to a public health priority. The time is right to invest research and practice resources in both institutional and community-based models that re-humanise care and, ultimately, create safe and supportive settings for those who grieve.